Supporting carers in the home

Putting the spotlight on the invisible workforce of family carers at end of life

Gunn Grande

When we think of support for patients with life limiting illness, many will think of front line nursing care, such as Macmillan, Marie Curie or hospice care. However, the real heroes in supporting patients are family carers, argues Professor Gunn Grande from our School of Health Sciences. These include friends who often become part of people’s ‘extended family’.

We know that most people with life-limiting illness prefer to be cared for at home for as long as possible in familiar surroundings. This is not realistically possible without the support of lay carers.

The most consistent factor in enabling people to remain at home towards the end of life is the presence and willingness of family members to provide care. An estimated half a million of them provide end-of-life care in England and Wales every year. Our research has found that in patients’ last three months of life, family carers put in an average of nearly 70 hours a week, including emotional support, organisation, personal care, symptom and medicine management. Health and social care staff provide valuable support, but family carers are there all day, every day.

This huge contribution comes at a cost to carers themselves. In addition to the long hours, being responsible for the care of someone with a serious illness is stressful. Most people have had no training or preparation for this. Carers suffer a big impact on their own mental and physical health. Given the number of carers involved, this adds up to a substantial public health problem. Often carers’ social circumstances, work and finances are also affected, adding to the impact. If the carer can no longer cope with caregiving, this also ultimately affects the patient.

If all these carers downed tools, the system would collapse. Health and social care services could not replace carers, nor would carers want them to. However, relatively small-scale investments in supporting carers to carry out their role could have large positive effects both on carer health and patient care.

Recognition and support for carers as ‘co-workers’ need to be built into the fabric of health care services. What information, preparation or training may they need to better manage the care for their family member? What seems self-evident to health care practitioners may be a real challenge to carers. Carers also need support for themselves as ‘clients’ in their own right, to look after their own mental and physical health, get a break from caring and manage work and financial pressures. This requires better joined-up health and social care and policy.

This will gain increasing importance given the increase in older people and number of deaths over the next decades. Most of us will be personally affected, either by becoming a family carer or being supported by a family carer. It therefore should be in everybody’s interest to put support for this mainly ‘invisible’ workforce on to the agenda.